CHD Awareness

In honor of CHD (congenital heart defect) Awareness week, I wanted to post some facts that I found:

• According to the March of Dimes, congenital heart defects are the #1 birth defect. It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. To put CHD in better statistics: about 10,830 babies are born each day and out of those babies about 411 are born with some sort of birth defect. Out of those 411, about 87 are born with CHD.

• Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

• More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

• Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

• Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured."

• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

• It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained specialists.

In our family, CHD has affected 2 of our 5 children. Obviously, Rebekah has a complex CHD called Truncus Arteriosus, but her brother, Aaron, was also born with two mild heart murmurs that resolved themselves by his fourth birthday. CHD is much more common than you may think!
We are very thankful for all of the research that has been done for children like Rebekah with CHD. Thirty years ago, Rebekah would have been sent home with us after birth, and we would have been told to enjoy her for the few months that we were able to. She would have had a less than 10% chance of seeing her first birthday, let alone the rest of her life. The surgeons and doctors nationwide who give of their time and talents to help children with CHD have our utmost respect and appreciation. Thank you for all that you do!!